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ah, the joys of the bumps in the road of a myectomy...

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  • ah, the joys of the bumps in the road of a myectomy...

    here it is, friday afternoon. Felix is still having coughing issues, so
    last night, noreen at NEMC, suggested he go for a chest Xray. We went
    to our primary dr (it took an act of G-D even to get an appt!), and they
    said they would get back to us. we also gave them the number at NEMC.

    I ended up working from home thru all of this , attempting to get
    enough time in to not have to burn more vacation. We stepped out
    real quickly and sure enough they called back.

    basically we were told that based on the xrays he needs to take 2 more
    drugs, and see his local cardiologist on monday. they called the
    wrong cardiologist! The also have not called in anything to the pharmacy,
    nor have they returned my calls yet. of course this all happens before
    the weekend . They did call up to NEMC (the primary) and talked
    to celeste, so at least there is some communications going on.

    This would have been so much easier if we lived near boston, or
    had HCM dr's and surgeons down here in atlanta. we have emory and
    St Joes, both great hospitals, but not for HCM.. sign...

    last weekend it was the nausea, this weekend, the lungs issue.

    sure hope next week is the week things get better. I hope that both
    shirley and caitlyn are doing much better and not running into these
    issues. I am crossing my fingers here for both of you.

    sandy

  • #2
    Re: ah, the joys of the bumps in the road of a myectomy...

    Sandy,

    I'm sorry to hear of your continued difficulties. I'm sure someone at the NEMC will get back to you, weekend or not, and will be able to advise you further and phone in any prescriptions that are needed. Call their pagers and/or emergency contact numbers if necessary. A recovering myectomy patient should get their highest priority.

    Is it your local doctors' feeling that Felix is in CHF, or is this a secondary infection of some kind? Forgive me for being snoopy, but i'm beginning to stockpile information for my own impending surgery if it should become necessary.

    Take care,

    Jim
    "Some days you're the dog... some days you're the hydrant."

    Comment


    • #3
      Re: ah, the joys of the bumps in the road of a myectomy...

      the just called back and said that its fluid in the lungs and he
      needs to go back on lasiks (dont know if I spelled that correctly). will
      just need to be close to the potty after he takes it

      another run to the pharmacy. they are getting to know me real well.
      have to also get the kiddies soon as well.


      sandy

      Comment


      • #4
        Re: ah, the joys of the bumps in the road of a myectomy...

        Hi Sandy, Sorry to hear about Felix having these problems. You know I am familiar with that route ;fluid in the lungs and all. Felix has been on the Lasix before? Before the surgery or while in the hospital? Just make sure in addition that he weighs himself same time same clothes or without clothes everyday when he gets up in am. An increase of 2-3 lbs daily needs to be watched . Is his weight comparable to when he left NEMC. Has he still got weight on from the surgery? I know it is normal post myectomy or after any open heart surgery to have the pleural effusion. It should get less as the lasix works on him and he recovers more. Don't panic yet if it gets worse and I know he does not want to hear this but they can drain it. I in the end improved much faster after they took 850cc's out. But the body is amazing and it most probably won't come to that . I have CHF and had it priorly so I think some of us are just prone to added complications. I hope he feels better soon. Also if he has been on Lasix before you know to watch for Potassium depletion. Sorry for the inundation just hope to be able to help a little. Keep the faith. Pam
        Dx @ 47 with HOCM & HF:11/00
        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
        Lead failure,replaced 12/06.
        SF lead recall:07,extracted leads and new device 2012
        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
        Genetic mutation 4/09, mother(d), brother, son, gene+
        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

        Comment


        • #5
          Re: ah, the joys of the bumps in the road of a myectomy...

          Sandy

          I hope felix is doing ok today, i am having the lung problems too, mine is fluid also and the fact that i was a 30 year smoker, i take 60mg of lasix a day so far they have taken off 15 pounds of fluid since surgery and i use oxygen at night to help me breathe better my oxygen Sats drop to 72 if i don't use oxygen, tell felix to hang in there it will get better each day has gotten better for me even with the oxygen


          Shirley
          Diagnosed 2003
          Myectomy 2-23-2004
          Husband: Ken
          Son: John diagnosed 2004
          Daughter: Janet (free of HCM)

          Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

          Comment


          • #6
            Re: ah, the joys of the bumps in the road of a myectomy...

            they had him on lasix while in the hospital. he has been weighing
            himself every day and has been losing weight since he is still barely
            eating. they also perscribed potassium as well. he will start tomorrow
            on it. I reallly hope this does it for him. the coughing is keeping him
            from really sleeping or napping.

            i really hope over the weekend we have a turnaround; I would hate
            to have him have to have the fluid drained. yikes! its only one lung
            though

            sandy

            Comment


            • #7
              Re: ah, the joys of the bumps in the road of a myectomy...

              The doctor still has him on lasix doesn't he, is he up moving around that is very important he be up moving that will help with the fluid, i make myself eat also, but that is getting better, they had to give me IV lasix in the hospital my body was swollen double the norm and they pumped 80mg of lasix in me i stayed in the bathroom that day, still a little puffy but getting better, doctor wants me to stay on 60mg of lasix daily, Felix think positive it will get better

              Shirley
              Diagnosed 2003
              Myectomy 2-23-2004
              Husband: Ken
              Son: John diagnosed 2004
              Daughter: Janet (free of HCM)

              Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

              Comment


              • #8
                Re: ah, the joys of the bumps in the road of a myectomy...

                Yes thanks Shirley I forgot to talk about the moving around it is so very important glad you put that in. I did not feel like moving but it is key to circulating and getting everything going in the right direction. In spite of the poor appetite forcing oneself to eat ,yes that is important too and drinking plenty of fluids as that is the true vehicle of transport out of the body for all those toxins , unless your kidneys are compromised to begin with. Most probably Felix has lost significant body weight so it will be difficult to know when he is at a dry weight. Watch ankles ,feet, abdomen swelling and yes hands and arms for any signs of tightness and swelling. If they are not swollen then that may very be close to his new dry weight .The visiting nurse I had post surgery measured my girth every visit, my ankles and feet also. We were able to dose me with the proper Lasix everyday that way as I had lost body weight also and did not want to run the risk of over dehydrating. They think both my stints with a-fib may have been provoked by too rapid a fluid loss.Don't even think about that added delight! My healing heart goes out to you all, recoveriees and family members. Hang in there , there is a light at the end of this tunnel. Pam
                Dx @ 47 with HOCM & HF:11/00
                Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                Lead failure,replaced 12/06.
                SF lead recall:07,extracted leads and new device 2012
                [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                Genetic mutation 4/09, mother(d), brother, son, gene+
                Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                Comment


                • #9
                  Re: ah, the joys of the bumps in the road of a myectomy...

                  yesterday felix had tons of nausea again. I know he is not eating much
                  of anything, but that should not be causing it.

                  anyway, he went to the cardiologist this morning (I had a friend
                  drive him--I have missed too much work) and he was told that the
                  lasix probably is what made his nauseous and to stop it. They are
                  doing another chest xray again. THe coughing has pretty much stopped,
                  so we are hopeful, but if there is still fluid, he will have to see a pulmanary
                  expert and get it drained.. ouch!!! I am keeping my fingers crossed
                  that this will not be the case.

                  I would just like to see a step forward, as opposed to 3 steps back.
                  It just seems like we are going backwards all the time here.

                  sandy

                  Comment


                  • #10
                    Re: ah, the joys of the bumps in the road of a myectomy...

                    Oh Sandy I am so sorry to hear this. Once Felix gets regulated in the right direction I am hopefull that the 3 steps back will cease. The nausea is a tricky thing . With me the nausea was worse if my magnesium level was just at the low end of normal So now I always make them pay attention to that level as well. Often I take mag supplement esp if I start with the nausea. If they did labs ask what his level was. I don't wish to cause any more undue stress so if you have ?'s about pleural tap just ask I'll answer what I can if you desire. Let's hope you don't need that info . Both of you hang in there. Pam
                    Dx @ 47 with HOCM & HF:11/00
                    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                    Lead failure,replaced 12/06.
                    SF lead recall:07,extracted leads and new device 2012
                    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                    Genetic mutation 4/09, mother(d), brother, son, gene+
                    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                    Comment


                    • #11
                      Re: ah, the joys of the bumps in the road of a myectomy...

                      Sandy-

                      Keep the Faith - these complications are "Normal" My Myectomy was 7 months ago & I take 4 Bumex (Lasix became ineffective by the time I had surgery) a day & still struggle w/fluid retention. If Felix came home with a plastic breathing tube (the one with the balls, I don't remember the name) be sure he uses it 10 times a day. Most definitely he must keep moving around. I found it easier ti sleep in an upright position - propped in bed or on the sofa - it's easier to breathe and less coughing (which is sooo painful)
                      You are doing a SUPER Job! How lucky he is to have you!
                      RONNIE
                      RONNIE

                      Comment


                      • #12
                        Re: ah, the joys of the bumps in the road of a myectomy...

                        thanks pam...

                        I know felix takes a supplement with magnesium everyday. I am definatley keeping my fingers crossed, as I really dont want him to
                        have to have his lung drained. I think the more procedures you do,
                        the more prone you are to even more complications. THe lung thing
                        also brings up some emotional issues for him as well related to his
                        father and his death.

                        sandy

                        Comment


                        • #13
                          Re: ah, the joys of the bumps in the road of a myectomy...

                          here is the latest:

                          the nausea is getting worse and worse. Felix will not eat. the stopped
                          teh lasix and potassium. of course the one thing he did eat this morning
                          was a banana . I did call NEMC and they cannot do much for
                          us since he is no longer in their primary care. I just paged his
                          cadiologist. I want to get him zofran (my pregnant friends swear by this stuff). They also did no the echo that was requested.

                          the fluid is at a level that can go either way. so now we have to a pulminary expert.

                          I have the kids sent out to neighbors right now. The dr's office called
                          back and they wont give him anything. it was the other dr.

                          this truly sucks.

                          sandy
                          Fx

                          Comment


                          • #14
                            Re: ah, the joys of the bumps in the road of a myectomy...

                            Sandy and Felix,

                            I'll be praying for you today from the other side of the world while it is night there that tomorrow morning will start the best day yet.

                            Rhoda in Beijing

                            Comment


                            • #15
                              Re: ah, the joys of the bumps in the road of a myectomy...

                              Hi Sandy and Felix,
                              Geez, you guys are on the road to recovery, but I think you took the bumpiest road around – until you realize what might have been. I’d like to make some suggestions, for whatever they may be worth.

                              One thing that might possibly help with the nausea would be Pepto-Bismol. This is Pepsin (a stomach sweetener) and Bismol (earth – to absorb excess acidity.) Also, it should not interfere with the other medications.

                              If Felix’s legs swell from excess fluids tell him to keep them elevated as much as possible. This will help the fluid dissipate back into his bloodstream.

                              Try to get Felix to eat some small, light meals – even if it’s just a slice of toast, or a soda cracker. If he can tolerate it, it will go a long way toward making him feel better. (This does not include Hamintashin. Of course you and the kids can have all you want.)

                              If he is upchucking be very careful about dehydration. Plenty of fluids is the key. I know it sounds like bringing coal to Newcastle, but both conditions have been known to co-exist. (Been there – Done that.)

                              Finally, there’s always the dreaded ER. They have actually been known to write prescriptions if necessary, and they can do echo’s too.

                              Please keep us posted. There are a lot of people here who are concerned, care, and are pulling for you.
                              Burt

                              Comment

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